Sharing a positive update on Mr. Clifford's journey. After some challenges finding the right vent settings, we've had over three weeks of stability – a big step toward reducing his support! With fewer vent adjustments, Clifford has been able to rest, grow, and make developmental progress. He's now more resilient, handling life transitions with less stress, moving and interacting without as significant desaturation.

I can’t believe it’s already been a month since Clifford’s tracheostomy. While he has recovered well, the last few weeks have still been tough. We had high hopes that getting the trach would give Cliff the support he needed to go home, but he showed us he just isn’t ready yet. Although he is in a much better place than he was a month ago thanks to the trach, his lungs and tracheamalacia are too severe to manage outside of the hospital at this time.

As you know from my last post, we've been approaching a pivotal point in Clifford's journey. Over the last week, he started to have more episodes where his oxygen saturation would drop. This prompted the doctors to conduct a bronchoscopy, a procedure where they insert a small camera down Clifford's throat to see what exactly is happening during these episodes.

It's been quite a while since my last update. It's hard to believe we've now been on our NICU journey for 93 days. The past month has been filled with both challenges and triumphs, but overall much-needed stability for Clifford. In terms of milestones, we're celebrating a significant one as Clifford crossed the six-pound mark— our little warrior is 6x his birth weight! Additionally, all his brain scans have returned normal results, providing us with so much reassurance.

Since our last update, Clifford has been doing better. He’s been able to fight through his most recent infection, although his oxygen needs have continued to be very high. Over the last week he’s been stable, but not making much improvement. In other news, we laid our sweet Nellie Kay to rest on Sunday. We held such a special service for her on the most beautiful Fall day. Now, we have a place to visit her anytime we want.

Going to keep this update short because I'm so tired and we've been down this road before. Unfortunately, our stable and 'boring' week was short-lived and Clifford caught another infection. We're not exactly sure where the infection is, but earlier this week he started acting not himself - oxygen needs rising, and very uncomfortable.

This week we’re grateful for our first ‘mostly boring’ update! Clifford is now 5 weeks actual, 29 weeks adjusted. After an unimaginably difficult week, he has had tremendous improvement. He’s continued to pee and has lost most of the fluid build up, meaning he is back to a normal weight of 1lb 8oz. They started feeding him breast milk again, although a very small amount to start, we are hopeful he can start to gain weight.

The rest of this week continued to be scary. After Clifford was able to pee and get his kidneys working again, he had a good night. Being in a more stable place the next day, the doctors decided to send him into surgery to get a longer-term picc line placed for his meds, blood draws, and transfusions.

Let me start off by saying that by the grace of God, Clifford is still with us and still fighting. We are truly in awe of this little guy's strength. 24 hours ago, I wasn't sure what this update would look like. Yesterday he still hadn't produced urine (48+ hours total), and we weren't sure how much time Clifford had left with us. Feeling helpless, we did the only thing we could do, surround him with love.

We wish we had better news to share, but Clifford took a turn over the weekend. While we finally got negative blood cultures and cleared the fungal infection (and pneumonia), the doctors think it's likely he has contracted a new bacterial infection. With this and everything his little body has been through over the past couple of weeks, his kidneys have stopped functioning, and he isn't producing urine.

On Monday morning (8/28) Cliff's oxygen needs shot up to 100%, and he was still struggling to breathe. This was a drastic change from a stable weekend before, concerning us and the doctors. We immediately ran tests, confirming that baby boy was battling numerous infections; pneumonia in his lungs and a rare fungal infection in his blood.

Wow, it’s been a week. The past 8 days have felt like a lifetime. This chapter of our journey has proven to be the toughest and most emotional of them all. Overall, Clifford is stable and doing well. He is the cutest little guy you’ll ever see, and loves to wiggle around and kick his little legs. He’s completely stolen our hearts – and the nurses.

Grief. I’m feeling a lot of it this week. Yesterday I came home after nearly a month in the hospital — not pregnant and without my babies. Our house feels extra empty and extra quiet. 

The last 24 hours have been tough. I've continued to bleed and cramp over the last few days, and unfortunately, the cramping increased in intensity last night. The doctor came to check things out and reported that I was 1-2cm dilated, baby boy was breech and had dropped lower - all pointing that labor could be approaching. Since Clifford is so small (just over 1lb), the doctor explained that things can escalate rather quickly.

Today is a big day. We made it to 23 weeks! This marks viability, increasing Clifford's chances of survival on the outside to 50%. We've been waiting a month to reach this milestone. When my water broke at 19 weeks the doctors told us it would be nearly impossible for us to make it this far. We wish more than anything Nellie was still growing alongside Clifford, but are thankful to still be pregnant with our baby boy

It's been one week. One week since our sweet Nellie girl passed away in our arms. We dream about what her life with us would have been like. Would she be goofy like her mama? Fearless like her daddy? We miss her every second of the day.